Through Her Eyes

This page is my personal blog where I share my own experiences regarding Albinism; the day to day adventures of being legally blind while being a new mom; and my early chapters of teaching. I hope it provides people with some insight, laughter, and a little more in depth explanation of who I am.

The point of having a blog is to be honest so I might as well admit right now that it was never my intention to start a blog. As I began to envision Gleason Advocacy and how I wanted to help others, I realized that I might be able to help others through my own experiences both as an advocate, and also as a comrade. There are many moments that having a disability has greatly impacted my life, both for the good and bad. As I open this door to my life I hope that people will be able to take something positive away from my experiences. So here goes nothing............

The Big A Word......

I feel fairly confident that most people that know me know that I am visually impaired (legally blind). It was a very hard thing to talk about at young age, but as I got older (late teens early twenties) it became very easy to talk about, or even joke about. I can talk very openly and candidly about being visually impaired and the struggles I have had. The thing I rarely, if ever mention to people is that I have Albinism. Most people haven't heard of Albinism, but man a whole lot of people know the word Albino. Being very honest I can't stand the word albino and I often cringe when I hear it being used. I think it is one of the biggest reasons why I am so passionate about "Person First Language". You cannot use the term Albino if you are using "Person First Language".

A quick special education teacher note- person first language is where you always identify the person before their disability. Example: That boy has Autism vs That autistic boy. - That girl has albinism vs That albino girl. I feel very strongly that people should never be defined by a disability. Yes, it can be/is a characteristic of a person. For me; having albinism or being visually impaired are characteristics I have, but neither define me.

Albinism looks very different in each person. Not everyone with Albinism has red eyes or white hair. Many people have pigment, it is just limited. That is me- I have blond hair, fair skin, and bright blue eyes. As I mentioned earlier, most people don't even know I have Albinism. I am the spitting image of my mother (who doesn't have Albinism)

Well that was a lot of word-vomit on the topic of Albinism. This blog is for me to share my personal experiences and I just want to be truthful. I don't think I could have done that without sharing that part of myself. I have Albinism and I am proud of that, but it is not my defining characteristic.

I can't speak for others, but for me I can honestly say "I only see something when I know what I am looking for". Being legally blind means I can't see (or at least see as well as most others.) My vision is 20/200 in my best corrected eye. Meaning; what most people see at 200 feet, I need to be at least 20 feet away to see the same object at the same clarity. I don't know any different so to me it isn't a big deal (I guess I can't miss what I've never had right?). I have realized over the past 30+ years that even when people "know" I am blind they don't really get it.

It was brought to my attention at a young age that I was being mean at school. Apparently my friends felt I was ignoring them or not acknowledging them on the playground one day. I remember thinking to myself these kids are crazy; they weren't even on the playground. Of course I know now that they probably were on the playground and the chances are that one of them most likely waved at me. (Come on!!!- who waves to a blind person from afar?) This would just be the beginning of many awkward smiles and waves from others that I would not be reciprocating. (So if you have ever felt this way, I am sorry!).

When I plan to meet up with a friend I am constantly scanning my surroundings looking through my mental notes that I make on everyone:

• Height and body style
• Hair Color and Style
• Glasses, hats or purses
• Car color, size and type.
• Style of clothing.

It's not that I am judging you, I am just trying to see you, especially in a crowd of people. I used to hate meeting up with friends in public places. The stress I would feel about trying to find or "see" my friends would leave me seconding guessing and trying to cancel. What if I don't find them? What if I accidentally talk to the wrong person (and yes that has happened quite a few times). As a young teenage girl I was always afraid of being embarrassed, but I guess what teenager isn't afraid of that. Cell phones have made meeting up with friends so much easier. I just have to send a quick text "I am buying tickets" or "I'll meet you by the front door".

When I know I am meeting up with family or friends I at least know to be looking for them. The hard part comes when I don't plan on seeing you at the grocery store, at the gas station, or out in the community one day. I spend so much of my time trying to see what I need to see- making sure I am watching my boys, trying not to step in front of people, reading signs or papers in front of me, that I become blind to the details. I always see a person, but not always the details. I usually don't see a person's face clearly until I am less then 10 feet away. I've learned to just always say hi, smile and wave whenever I am in "close" proximity to anyone; no matter who it is. While for the most part I get a lot of compliments for always being so nice and cheery to everyone, the reality is I am just covering my bases. After all, I wouldn't want to awkwardly glare at my boss.

I try and anticipate in each place who I could potentially run into. I know there is always a chance to encounter one of my friends at our kids' daycare, so I keep my attention piqued just in case. Or at Target, I know my neighbors could always be down the next aisle. When I take my boys to our local library, I always keep my eyes open for a few of the usual moms, but I can't predict it all. I am bound to miss and offend someone.

Consider this my disclaimer- If I know you and we happen to be out in public at the same time and place, and it is unplanned - I won't see you. So I probably won't wave at you, and I won't smile in your direction or give you a head nod, but I am not trying to be rude... I just don't see you. Please come up and say hi to me - I promise I do want to talk to you (and if I don't, I'll just make an excuse up that I need to leave anyway- just kidding!). And hey, there is a plus- if you see me out in public and don't want to talk to me and don't want me to know you are there. Not a problem. The likelihood is I probably won't see you.

Every parent has their own quirks right? Hopefully everyone says yes…or maybe I am just a weirdo.

Well I proudly admit I have a clothes quirk when it comes to my children. I spend an abnormal amount of time picking out my boys clothes each morning, and yes, some of the time is spent on “awe this shirt will look cute with these pants, no wait I like this button down shirt better”, but that is only part of it. Each morning when I get my boys dressed I am asking myself a hundred questions.

“Where will I be “seeing” my boys today? Will it be at afternoon pick up at daycare? Are we going to a play date at the park, or a meet up at the library? Maybe we are going to the zoo, or a new indoor play zone. All of these different places impact what I dress my boys in. That is because I need/want to be able to see them (and while I am a fan of bright neon, the boys don’t have nor do I think they want all neon colors).

When I pick my boys up from school I am instantly scanning the room for the blue dinosaur shirt I dressed James in, and the green jungle shirt for Jackson. I am picturing them in my mind before we left in the morning. For me clothes have always been easier to spot then facial features. I am much faster at scanning for colors then looking at faces.

This goes way back to when I was younger too. I must thank my mother for her extremely obnoxious bright pink ski jacket. I never thought much of it as a child, just that my mom had bad taste in clothes. But I know now that she always wore that jacket for me, so I could see her.

And sure, the chances are that another kid might have the same shirts as my boys. But I am quick to check the boxes of height and hair color too:). At daycare I am less stressed about “seeing” them because I also know they are there.

If we are going to the park, the zoo, or any other outdoor venue, my mindset changes. I am constantly thinking of what colors will stand out (no green if I know there will be lots of green grass, and avoid khaki if there is a lot of sand). I know these rules may seem silly, but for me it makes a big difference. If the boys are wearing shorts (which in Arizona we often do), then I try to have them wear bright colored socks. The small pop of color is easy to spot.

My eyes are very sensitive to light so when I am out in the sun I have even more trouble seeing. I am often squinting or looking down to avoid the bright sun. This can make it even more difficult for me to see. This gives me even more anxiety about being able to see the boys. I am sure I sound like a very paranoid parent, but I don’t have the luxury of casually scanning the playground, or sitting on the bench near the play structure. I won’t be able to see my kids from the bench.

The boys got some bright matching floppy hats as a gift this past year. At the time I thought to my self "hmmmm what would they wear these hats with? They don't have any outfits to match..." Well it is safe to say these hats go everywhere with us, despite the fact that they rarely, if ever, match what they are wearing. The loud colors mean that I can always see them.

My methods aren't perfect and each day brings a new learning opportunity. I work with what I have, and when situations arise I accommodate (just like I do for my students in the classroom). Right now I have a say in what my boys wear each morning, I know one day, sooner than I would like, they will want to pick out their own clothes and they might not care if it is a color mom can see. When that time comes I will think of a new strategy and overcome that barrier. For now, what they wear matters.

What do two pair of sunglasses, one pair of reading glasses, one pair of bioptic driving glasses, a wallet, an iPhone, and a set of car keys have in common?

Answer- They are all Chelsey’s bare necessities. These seven items are always on the go, and always in my purse.

I am sure you are asking yourself “who carries four pairs of glasses and why?". That would be me.

I think it is safe to say sunglasses are important for most people living in Arizona. I am no exception, and in fact it is actually painful to be outside in the sunlight without sunglasses. My eyes are incredibly sensitive to light and the bright light has me instantly squinting and looking away. As a result I always need sunglasses. If one pair is good, then two pairs are better; especially when your one year old insists on holding a pair (even when he has his own….).

I also have my bioptic driving glasses with me. Not sure what bioptics are, or why I have them? In 2006 Arizona passed a law that allows individuals who are visually impaired to use bioptic glasses to drive and pass the eye exam to obtain an Arizona drivers license. Bioptics are the most fashionable, trendy, fabulous glasses; NOT! They are however, the most amazing invention and I am forever grateful for them. Now I don’t want to give too much away for future posts, but for all the curious minds out there...

As one can only imagine, these little beauties aren’t the most durable glasses out there, so when they are not being worn they are in hard bulky protective case (which takes up quite a bit of room in my purse).

The fourth and final pair of glasses that I carry around with me would be my reading/everyday glasses. It is interesting, because my schoolmates and co-workers probably only know me in my everyday glasses, while my friends and family see me more without them. I can’t speak for all people who have Albinism, but for me I only gain a little positive change with reading small text with my glasses. Other than that, it seems to me that there isn’t enough of a correction to wear them all the time. While I often opt-out of wearing them, they are always in my purse for the chance that I might have to read a menu or other printed text.

Being able to find a purse to accommodate all of these bulky items isn’t always easy. Big is usually my only option, and to the dismay of my bank account, a bigger purse usually means a bigger price tag.

This is just another example of how my visual impairment impacts my day, but I feel it is an illustration of the fact that I won’t let it change my course.

It is hard to always practice what I preach when it comes to self advocacy. Admitting when I can’t see something isn’t necessarily hard, but time consuming.

There are moments every day (even when people know I am visually impaired), that someone tries to show me something, or asks me to read text with small print. When I make a point to say “oh I can’t see that”, it surprisingly throws people off. Of course most people are very kind and will try and explain what they were trying to show me.

The most common insistence is when someone shows me something on their phone. A picture is usually fine because I can quickly and easily enlarge the photo, with a pinch of my fingers. The problem comes when someone shows me a text or something inside of an app. Most people don’t have their settings set to large font, so seeing their phone just isn’t going to happen. Acknowledging that I can’t see the object, prompts people to try and enlarge the object on their phone or begin a long winded demonstration. Depending on how tech savvy (not savvy) they are this could also lead down a rabbit hole of all sorts of phone questions. I know that most people are usually just sharing something as polite conversation, so instead of entering what could end up as a 5 minute conversation, I opt for the polite smile and “awe that’s cute”.

To answer your question: “Has this ever backfired?” or “Have you ever made the wrong comment in response to what was being shown?”

Of course, and it is totally awkward. I make a point to laugh at myself while explaining that I couldn’t actually see what I was looking at. My close friends and family will laugh and call me lazy for not admitting that I couldn’t see it. The reality is sometimes it’s just easier to fake it.

I know this isn’t a good excuse, but it is honest. I know how my students feel when they don’t want to ask to sit in the front row, or for a copy of the notes. Sometimes it feels like you are inconveniencing someone, even if they don’t mind at all. Something as simple as saying, “oh I can’t see that” can often feel like you owe someone an explanation.

As I encourage my students to self-advocate more and speak up, I realize that this is something I need to continue to work on myself. My students inspire me to speak up more and educate those around me, not just for myself but for all people with varying abilities.

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Just a little perspective :)

The picture on the left is what must modify my text messages look like, the picture on the right is the font size that most phones come pre-programmed with. As you can tell it is necessary for me to enlarge my text significantly.

I love to read. It is one of my favorite things to do in my free time. I can easily read a 500 page book in a day (well prior to having children I should say). I was so excited when I found out I was going to be a mom, because I couldn’t wait to read all of my favorite childhood stories to my little bundle of joy. After my baby shower I felt truly blessed to receive so many children's books. When I sat down to refresh myself with a few of my favorites I’ll Love You Forever and The PaperBag Princess, by Robert Munsch, and Go Away Big Green Monster by Ed Emberly (just to name a few), the excitement turned to sadness when I thought about the lack of adaptation that these books provided. I am used to enlarging the font of any book I am reading with a quick swipe of my finger.

It is funny how we forget trials and tribulations over time. I bet most people don't think about font type, size, color, and background. I had long forgotten the frustrations and troubles I had as a child with reading; specifically reading children’s picture books. The memories came flooding back. Reading that small font on poor contrast was a frustrating experience, and I was about to go back down that road. This time it would involve an antsy child sitting on my lap insisting that I move the book away from the tip of my nose because now he can’t see the pictures.

My vision hasn’t changed much from the time I was a small child but I do have a much bigger sight word bank. I rely heavily on what I think the words should be. I usually don’t need to see the letters in common small words like “the”, “and”, “or” “is”, “it” “are”, “I”, “you”, “me”, and “for”, I easily read over these words as I see them hundreds of times a day; my brain just knows to anticipate them.

The trouble comes with longer words. When I am reading smaller text I am usually looking at the word as an image. I am looking at letter size and shape to quickly anticipate what the word may be. Some letters are easier to see, like tall letters (t, l, b, d, h, f) or letters with tails (g, j, q, y). I have a hard time with letters that are the same size and shape. I often misread the following letters confusing them for the similar ones in the grouping- (r, n, m, w) - (c, e, a, s) and (v, u,). When I am reading with my children, I often have to pause and pull the page close to see the distinguishing features in these letters. Even after getting a closer look, I still make a lot of mistakes.

I know that if others were to over hear my reading they might be horrified and thinking “this woman is a teacher and she can’t even read a children’s book?”

I could read the book with no problem if the font was Times New Roman, size 14 with blank ink on a white background, but most children’s authors and artists don’t design their books that way.

I read frequently with my boys and I have memorized many of their books. I love when this happens and I am able to recite the book without having to actually look at the words. This gives them the opportunity to hold the book; mom is no longer holding their book to her nose.

A few of my favorite books to read to them include (and yes it is because I have memorized them)

The Little Blue Truck, The Pout Pout Fish, Love Monster. Won’t You Be My Huggaroo, The Very Hungry Caterpillar and Dinosaurs, Flip the Flaps.

As the boys get older I know that I will miss all of these moments (even the ones of us fighting over who can or can't see the book). I hope their memories of reading with mom will be fond ones filled with snuggles and laughter (both at the plot in the story and at my many reading errors). I hope that they see I wasn't sacred to read to them, even thought it was a struggle. I hope that one day it helps them overcome any fears or struggles they may have or encounter. Life brings all of us challenges and I think our character is built on how we overcome these challenges.

I am old (not too old mind you) and mature enough to admit now that I have been blessed with two wonderful parents. I feel incredibly lucky to have supportive and encouraging parents who have helped me to build my confidence and taught me the importance of self-advocacy and self-awareness. I attribute my accomplishments and successes to my parents, family and friends that I am surrounded by. I wouldn’t be the person I am today without the direction and drive that these individuals have provided me.

After I graduated college and began teaching I started to get a lot of comments: “wow you have accomplished so much for being blind”, “wow, that is so impressive”, “I would never know you had a disability.” I was often baffled and honestly speaking sometimes offended by these comments. It made me feel that the assumption was that people with disabilities don’t go to college, people who are visually impaired or blind don’t have jobs or work. Being a person with a disability and being a special education teacher I was utterly confused on people’s perspective. My parents had always instilled in me that I could be whatever I wanted when I grew up; that my visual impairment was just a part of me but did not define me.

I realize now that not everyone has this same support system. I don’t know what type of person I would have been without my parents. Navigating the special education system and the world of disabilities is not an easy task. There are many resources out there but unfortunately there isn’t a manuel on how to access them. There isn’t a one size fits all type of support (even though some school districts try to say there is). If my parents hadn’t helped me navigate this system I am not sure that I would have gone to college or had the confidence to utilize the disability resource center where I was able to get the necessary services to help me succeed.

I was fortunate enough to have parents who fought tirelessly for me to have equal opportunities. My mom spent countless hours in IEP meetings ensuring that I had access to all of the materials and opportunities my peers had. They made sure I had educators who would build me up and never set ceilings on my learning. If someone wasn’t the right fit for my schooling they took the necessary steps to either educate that individual or have them removed from the IEP team.

While my parents were always my biggest advocate in school, they also wanted to make sure that I wasn’t treated any different at home or in the community. My mom often says how happy she was that I was the third child. She laughs when she says she didn’t have time to treat me any different than my siblings and she didn’t have time to dwell on my visual impairment. I was rewarded and reprimanded just as my brother and sister were. I grew up with the expectations to do chores at home, do well in school, have summer jobs and attend college.

(Well maybe I disappointed my dad a little when I chose to attend the University of Arizona over his alma mater Arizona State- Bear Down!)

If my parents ever had fears or doubts that I couldn’t or wouldn’t be able to do something they were very good at hiding it; I have no memory of being treated any differently than my siblings growing up or told that something was out of reach. They handled it with such grace; I can only hope that if I were ever in that situation I would follow suit.

I can only imagine how difficult it must have been as a parent to find out that your child is “different”. I know that my parents went through a grieving processes upon my diagnosis. The scary terms of Albinism, Legally Blind and Nystagmus were thrown at them all in one day, terms that would be scary to any parent and anyone unfamiliar with the vision world. My mom asked the doctor questions about Braille, driving and the overall quality of what her daughter’s life would be. The doctor was short with responses and unable to give my parents the information they needed to find comfort.

The road they were headed down was new and they didn’t have any friends or family with children like me, they had no reference point. Luckily they were given a contact for the Foundation for Blind Children’s Preschool in Phoenix. I know this was the biggest resource for my parents, and one they would continue to seek out well into my teenage years.

My parents were always my biggest advocates. Whether it was problems in school, struggling with community activities or my personal struggles with being visually impaired. My parents were always there to guide me through the challenges and make sure that the bar was never lowered. This is the type of support and encouragement that all children and young adults with disabilities need and deserve. Teaching others about self-advocacy and building a positive self image is something I hope I can help others with. I hope that when people read my blog they see that the sky truly is the limit for all people, with and without disabilities.

In the words of Henry David Thoreau “Go confidently in the direction of your dreams! Live the life you've imagined…”

Many people over the years have asked me how I handle being a teacher with a disability; specifically being visually impaired. To be honest, I never gave my disability much thought. I became so accustomed to accommodating for myself in the every day setting that I was blind to the fact that I had created these accommodations in the workplace. It never occurred to me that I might be doing things differently than others. Since these questions have come up quite a few times and I really want to help others feel more confident and independent in their professional world, I thought I might share my personal accommodations and strategies while working.

*Number 1 - Wear a Watch - I always wear a watch in the classroom (preferably a cute stylish one that will match my outfit, but I am not too picky). I can rarely if ever see the clocks on the wall. As most teachers know, your day is run by a clock. I can use my phone to check the time as well, but for me I prefer the ease of turning my wrist then trying to pull out my phone. (As I mentioned in a previous blog, I have an iPhone 6+, and while it’s large screen is easy to see, it never fits in any of my pockets).

*Number 2 - Ctrl + - This is my favorite feature when using a web browser. Whether I am sitting at my own desk typing up IEP’s, or checking with students while they are using student computers. I can easily press those two keys and enlarge the screen to whatever size necessary. For me, it eliminates the need for some software enlargement programs like JAWS Screen reader. Many of the enlargement programs offered for PC’s and Mac’s are great for some individuals with low vision, however they make me feel motion sickness and end up causing me more frustration then help. You really need to find what works for you because no two people are the same.

*Number 3 - iPhone and/or iPad - Taking a picture or document that you can zoom in on with the swipe of your fingers is one of the best inventions! I use this strategy both in the classroom and in the community. When I encounter text that is too small or too far away, I quickly take a picture and zoom in. It is that easy. This is also a strategy I encourage my students to do when taking notes or copying from a board.

*Number 4 - Memorization - I know this one might seem odd, but being able to quickly memorize all of my student’s names and their seat assignments makes “seeing” them a lot easier. I am also able to memorize the sound of their voices. This makes it so that I don’t need to actually see the student to know who is talking. As the school year gets started and the days begin to turn to weeks, I am quick to learn my students personalities, specifically their mannerisms, and clothing styles. These traits help me identify students even when I cannot see the details in their faces. Also knowing my students well makes the classroom management part easy for me. I can’t speak for all teachers, but I feel fairly confident to say that most really good teachers use this tactic too (not just visually impaired ones).

*Number 5 - Disability Disclosure - Every person, with or without a disability, no matter their profession has to decide what they are willing to share with others. For me disclosing my visual impairment to my coworkers and my students is imperative. It wouldn’t take long for people to notice that I hold papers close to my face, that my eyes shake because of the nystagmus, or that I almost always look away or squint when I am outside. At some point it will all come out and I am more comfortable and confident talking about my visual impairment on my terms. I often set the stage those first two days, using an ice breaker activity and using myself as the demonstration. (Two truths and a lie are always a big hit with the students). I allow the students to ask questions and I answer as honestly as I can. From my experience students are receptive to what I have to share. They ask questions or give me silly scenarios “Can you see how many fingers I am holding up?” After I disclose my visual impairment our activity goes on and Mrs. Gleason’s disability just becomes a thing of the past.

Whether I am thinking about accommodations for my students, or for myself I tend to lean toward small and natural supports. There are lots of options out there and some are even small enough to fit in your pocket or wear on your wrist. Something as simple as a watch helps me tremendously (now if I could just convince my husband I need an Apple Watch...).

When I think about all of the accommodations that I use, I recognize that my ability to self advocate and disclose my disability is the greatest accommodation I can make for myself.

Being visually impaired can definitely lead to some embarrassing moments. While I am used to these moments and prepared to laugh at myself, something I hadn’t thought about is how it might impact my kids, or be embarrassing for them. My boys are 1 ½ and 3 ½, and while I don’t think they are embarrassed or even know that their mom is visually impaired yet; I am sure they would be embarrassed to know their mother has let them out with food on the their faces more than once. With my visual impairment they are often headed out the door with a few visible buggers, or a lovely milk mustache. I try to check for clean faces when getting them ready and even sporadically while we are out, however some of those details and small particles of food just get missed. Let's be honest, trying to clean a very wiggly, constantly moving, fighting target like my one and half year old is hard for anyone, for me, trying to see and clean his face is nearly impossible.

I heard another person with Albinism once explain that it isn’t the distance, it’s the details. This is a very accurate statement for me. I see my boys, and I am usually quick to spot the bright red spaghetti sauce on their faces but most other small details are often missed. A part of me used to feel bad or even judged when someone had to point out that my sons had a runny nose or the food left on their faces. I felt that the comments were masked with internalized judgments of, “Who would let their child go out like that?” “Why wouldn’t she clean their faces?”. I know that it is everyone's best intentions to help and now I am great full when someone points it out.

As I get older I feel more comfortable and confident in myself and my ability to talk about my disability as it relates to me. However, I must admit that I am insecure when it comes to being a parent with a disability. It isn’t in my ability to take care of my children but how my children see me. I worry that they will be upset or embarrassed by something I don’t see or maybe a comment from a peer or friend. I am fairly confident they don’t care about the food on their face today, but down the road I don’t want to lead them astray or provide the wrong response. I hope they aren't bothered by their mom's weird driving glasses, or my need to hold everything too close to my face. I know it might seem silly that this would be a fear of mine but I am always worrying about my children and trying my best to protect them from the harsh realities in our world. There are people out there that judge (for the good and the bad), and one day my children will experience judgement. I hope that they have the confidence and positive self-image to help them battle any negative judgement or comments. I know for me each day I strive to be a better parent, a better wife and a better role model. I know that I have a lot of room for growth in all areas and I am not afraid to admit it. I am confident that I will overcome this fear just as I overcame my fear of talking about Albinism. Every opportunity is a chance to grow!.

If they were always this messy then I would definitely see it :)

Phoenix is known as the valley of the sun with nearly 300 sunny days a year. With temperatures throughout the year averaging 75-80 degrees it is ideal weather for many. However being sensitive to the sun and having albinism can make living in Phoenix a little tricky. When summer temperatures are consistently over 115 degrees during June, July and August it is a wonder how anyone survives. For me, many of my days, both summer and winter, are spent inside or hunting for the few trees for shade in the desert.

I was born here in the valley, but when I was only four years old my parents made the decision to move to Portland Oregon. They felt that this would be a better option to raise a child with albinism. With grey skies 9-10 months out of the year I was able to play outside without the constant battles of sunscreen, hats, and sunglasses. I have the most wonderful childhood memories growing up in the Pacific Northwest. Many of these memories include playing outside in my neighborhood, exploring the woods behind our cul-de-sac, riding bikes to the local ice cream shop and long days boating on the lake. As a child I wasn’t afraid of getting sunburn or straining to keep my eyes open outdoors. It should be mentioned that of course I could still get sunburned in Oregon, but it wasn’t our daily concern. It is also common knowledge that most people in Oregon aren’t tan. My fair skin rarely stood out.

The decision to uproot your family and move isn’t an easy one, and it isn't for everyone. There are many individuals in Phoenix who have albinism and are very happy here. My parents didn't know much about albinism or many people who had it when I was young. With the limited knowledge of options they made the best decision they could think of. My parents took many risks when they made that decision. They left family, friendships and the world they had built together in Phoenix. I am forever grateful for the sacrifices my parents made when they took that leap of faith because for me Oregon was the perfect place to grow up.

Just before starting high school my parents made the decision to move back to Phoenix to be closer to family. My parents felt that at 14 I was old enough to advocate for myself and take responsibility for my own needs (applying sunscreen, wearing sunglasses, and wearing hats). While I was old enough to know better, I was also in denial of being different. Don’t worry, there will be more on this topic in future posts.

Those that know me at all are well aware of my love for anything Oregon; and really anything in the Pacific Northwest. I will always route for an Oregon team, both professionally or college league (go ducks). I will cheer on my Seattle Seahawks and Mariners over the Cardinals and D-backs any day. People often ask when I’ll move back because I talk about Oregon so much. I want to move back and maybe one day we will have a second home there (to of course escape these dreaded summers) but the reality is we have built our home here in Phoenix now. Our friends, our families and our careers are here. As I watch our children playing with their cousins, seeing our parents being grandparents and our lives unfolding here I am happy with our decision to stay. If Cody and I were to have a child with albinism we both agree that the best option would be to move and we would likely make the same choices my parents made nearly thirty years ago. Since albinism is a genetic disorder it is something we have considered in each of our pregnancies and will continue to thinking about as our family continues to grow. But for now and the foreseeable future our home is here in Phoenix. (And yes, I buy lots of SPF 50 sunscreen at Costco :) ).

I never appreciated the decision my parents made on my behalf until much later on in life; really until becoming a parent myself. I would move heaven and earth for my children, and if their needs ever required a life change I know would do it. When you have children your hopes are for a happy and healthy life and often times the diagnosis of a disability can leave you feeling helpless. My parents couldn't cure my albinism, but they could try and provide me with cloudy skies, lots of shade, and the opportunity to be young and carefree.

A Trip Down Memory Lane

The top left picture was my childhood home. I have moved a fare amount of times but that house will always be "home" in my mind. If I could raise my children in any home, that would be it!

The top right picture was one of our local parks- Roy Rogers Park. I spent many days playing soccer in the grass and exploring the woods.

The bottom left picture is from downtown Portland where I spent a lot of time walking along the river.

The last picture is from Klickitat Washington. This is just two hours northwest of Portland. My grandparents have a property there and I spent many, many summers and weekends playing on the river, sleeping under the stars and terrorizing my cousins. They still own the property today and now many of my aunts and uncles own the surrounding land. There are many family gatherings throughout the year and I only wish we lived closer so we could go. I know my boys would have a blast, just as my sister and I did.

I mentioned in one of my of my earlier blogs that I wear biopitc driving glasses. Many people inquire about them, so I figured I would take this opportunity to share my own personal experiences with wearing bioptics and driving.

In 2006 Arizona passed a law that allows individuals who are visually impaired to use bioptic glasses to drive and pass the eye exam to obtain an Arizona drivers license. They magnify between two and six times, and are used to improve distance vision for those with severely impaired eyesight. The glasses are made up of my regular lenses/prescriptions in the large lens, often referred to as the carrier lens, and attached to the top of the glasses is what is referred to as the telescope. My telescope is placed in the top right corner of my left eye. My Ophthalmologist and I made the decision to place my telescope in my left eye because it has always performed stronger and more stable over the course of my life. My bioptic lens is magnified to the 4th power, bringing everything four times closer. I also opted for the larger telescope, which enlarges the viewing field through the telescope.

When I wear my bioptics, my distance vision moves from 20/200 to better than 20/20. What most people don’t realize though, is that I only look through my telescope when I am reading signs, approaching intersections, or doing my distance scans (about every minute or so when driving around the city). Otherwise I am just looking through my carrier lens which has my normal everyday prescription (20/200). This is because when I look through my telescope my entire field of vision is channeled through just a few millimeters, dramatically impacting my peripheral vision.

Learning to use these glasses was not an easy task and was not taken lightly. I had to complete 10 hours of exercises at home and outside before I could even get behind the wheel. My Ophthalmologist's office sent home different papers for me to hang up both inside and outside. Using these papers, I would have to try and quickly spot and identify the images on the paper before looking away. This was a practice I had to repeat at varying distances. This strategy would later help me spot and identify objects like signs or pedestrians, and then return to my regular lenses all in a matter of seconds.

I should mention that during this time I was at college and living in my sorority house. While I was comfortable talking about my visual impairment with my sorority sisters and friends, at that time they were not aware I was working towards obtaining my drivers license. On top of the awkward discussions regarding my ability to drive, I wasn’t quite ready for them to see me in these less than fashionable glasses. In the beginning I often felt insecure or embarrassed in the way that these glasses looked. I often avoided eye contact with others while driving just so I wouldn’t have to see their awkward stares.

After I completed my 10 hours of homework/training my doctor approved me to get my permit and begin my behind the wheel training. I had to complete 20 hours of behind the wheel training with an adaptive instructor before I could be cleared to get a license. I must admit that I really enjoyed this training, and I think my parents were very thankful there was someone else qualified to teach me to drive. I think the prospect of me behind the wheel made a lot of people nervous.

The training included freeway, night driving, parking, navigating surface streets, parking garages, drive-thrus, roundabouts (or as my husband calls them, traffic circles) and battling rush hour traffic; although I think that rush hour is hard for most people.

After my 10 hours of homework, 20 hours of behind the wheel training, and 1 failed three point turn…… I received my driver’s license on Friday April 20, 2007, and I was over the moon with excitement. Well maybe I was a little bummed that it was 6 months before my 21st birthday, because I knew I would have to take turns being the designated driver… Not driving definitely had its perks in college.

The biggest stipulation to my driving is that I must be evaluated each year by my eye doctor. She checks both my peripheral vision and acuity, but we both laugh each year because with albinism your vision remains stable after puberty.

From a young age all I ever wanted was to drive. It wasn’t that I wanted to race cars or go on long road trips; I just knew that I wanted the freedom to be able to go places on my own, and not be restricted to bus routes and times. While this is an option for me now and I love it, I am usually quick to let others drive. While I do drive daily, it is tiring on my eyes, and my nystagmus is often kicked into high gear after driving around. Wearing my driving glasses, using the telescope, and the glare from the sun all cause me to get eye fatigue. Who knows, maybe one day when our kids are grown, and I have had enough of living in the suburbs, Cody and I will move to a larger city with great public transportation…. You know like Portland… Cody, Hint Hint :)